What's in Your Toolbox? We All Need a Lifeline or Two!
Having spent much of my life doing a fabulous job of faking being well, the importance of having a lifeline is somewhat new to me.
I don’t say that to boast because there is nothing boast-worthy about pretending everything is ok when it absolutely isn’t. In fact, I think that I must be a particularly stubborn person to have deluded myself for so long that I could manage this disease.
I’m referring, of course, to migraine. A monster of a disease that so often devastates and incapacitates. A disease about which so little is still known and yet which robs so many of a “normal” life. A disease that despite its severity results in so many of us isolating and being without much-needed lifelines.
Rampaging through my life
I’m not entirely sure what eventually caused a change of heart, but I suspect it was complete and utter disability. The realization that despite my best efforts, I simply could not control my migraine attacks the way I wanted to. The acceptance that life as I knew it, my “normal,” was not the normal that most other people take for granted.
More than that, though, it was a growing understanding that migraine didn’t only impact me physically. It also affected me emotionally and spiritually. It was a monster that did not discriminate in its rampage through my life and the impact it caused on those closest.
Welcome to my migraine life! Sadly, it’s one that so many of you are very familiar with yourselves.
An overwhelming storm
Bear with me for a moment, if you will, and put this image in your mind. It’s one of a stormy sea, huge waves, howling winds, and someone trying to stay afloat. There’s a flotation device that a person is trying to hold onto, somewhat successfully. However, every time there is a new wave or big gust of wind, it’s almost impossible to hold on.
This is so much like life with migraine. At first, things seem manageable, but then we realize that we’re out of our depth. The attacks start to change, or we get a new diagnosis for a comorbid condition. Triggers start to impact what we are able to do. There are financial and relational implications. Perhaps employment becomes challenging or even impossible. Maybe there is an unexpected medication side effect and treatment gets complex or scary.
Reaching for a lifeline
All these things represent huge waves in that storm or the gusts of wind that make it hard to stay afloat. Panic can easily set in – understandably! We desperately need a lifeline to hold on to. Something that will enable us to deal with today and to face tomorrow.
Needing a lifeline is not a sign of weakness or lack of courage. Rather, it is an essential part of managing an unpredictable and often life-changing disease. Do you have a lifeline? What do you do when panic sets in? While my lifelines are still a “work in progress,” here are some ideas I’d like to share with you!
What's in your toolbox?
The impact of having a friend, or friends, to reach out to cannot be underestimated. For many of us, this is not easy. Fortunately, modern technology has made it possible to connect with people all over the country and even all over the world. The impact of having someone to call, or text, or Facetime when panic or overwhelm sets in is huge!
In addition to the one or two friends you can reach out to directly, being connected to the online migraine community can be transformative in itself. There are a wide array of migraine groups available on Facebook, Twitter, and Instagram. Each one has a slightly different focus, but they all have an understanding of the importance of connection. If you aren’t already a member of some groups, consider joining. Reach out and tell folks how you are doing. Ask questions and learn. If you are feeling isolated or just need a virtual hug, this is the place to say ‘Hi!’
Do you have groups that are helpful to you? What do you most need in a migraine group and is it easy for you to reach out in this way?
3. Health network
While there is a shortage of certified headache specialists, finding a supportive doctor (or doctors) is essential. Having a supportive health network makes all the difference. With migraine we need access to urgent treatments without visiting the ER, help with stopping intractable attacks, assistance when there is an unexpected side effect, information about the latest options, and help navigating the insurance process.
Do you have a doctor or health care professional who is accessible and supportive? Do you need to make changes in your health network so that there is a lifeline there when needed?
With so many new treatment options FDA approved in the past two years, there are new potential lifelines to explore. Preventive and abortive options, both medications and non-invasive medical devices. Having a plethora of options in your toolbox so that you don’t get caught unaware is essential. Thinking ahead rather than taking one day at a time helps give back a little bit of control when panic threatens to set in.
Do you have effective and tolerable treatment options available to you? Is it time for you to talk to your doctor about trying something new? Have you and your doctor worked out an emergency plan that you can follow when your first, or second treatment option doesn’t help?
Do you have a lifeline?
A lifeline can come in many different forms and in itself is an essential part of our “toolbox” to manage migraine. The options are endless in variation and creativity, but the key is taking the steps necessary to make this a part of your life.
Migraine is a complex and destructive neurological disease that takes so much from so many. However, one thing it cannot take from us is the power of connection and the impact of reaching out to each other for support, help, and courage. So, let us know what your lifelines are. What ideas can you add to those above, and where do you turn when you’re in the midst of the migraine storm?
Have you taken our Migraine In America Survey yet?